Is there anyone out there with Hurthle Cell thyroid cancer?
I am so sorry you are having to have another neck surgery. Your spirits seem to be very optimistic and that is a very good thing. Sounds like you doctors are keeping close tabs on you.
Thank you for your sweet note. A second opinion pathology is currently being done at MD Anderson in Texas on my final pathology slides. I will feel very much relieved if that report is good also. Smiles and you will be in my prayers for everything to go well with your surgery. Lois
Just thought I would check and see how your mom is doing and if she received the final pathology results. Really hope all is going well for you both, Lois
I met with the head and neck surgeon and he says I need a bilateral neck dissection. I have a metastic HCC on the left side of my neck which may involve a major blood vessel. I will have another CT scan to determine the location of the tumor relative to the artery. I also had an HCC mass on the right side which was removed in May. Hence the need for the bilateral surgery. I'd love to hear from someone who has undergone this surgery. I was hoping it would be done soon, but the doctor will be on vacation so the earliest I can have it is July 23rd.
My concern with all the testing and radiation is that this is a radiosensitive cancer, HCC. Time is of the essence, so hang in there. The 23rd is right around the corner. I am so sorry to hear that this is the fourth surgery. What was your original TNM? Perhaps you were never told. Do you know the tumor size at the time of presentation? Was it in your lymph nodes? How about any distant metastatic disease at the time of your original surgery. If you can find any of this out, you would be more informed about the present prognosis.
I am stage III, but the TNM was T3N0M0 which was very good news. I am followed with blood each 2-3 months, full neck ultrasound each 6 months and travel to Johns Hopkins for endocrinologist and treatment,if necessary, every 6 months. I live in south Florida.
So far only the RAI was needed in the initial phase of the diagnosis of HCC. I had the rhtsh-(Thyrogen) in March, which, while very expensive, showed no recurrence.
Good luck next week.
I am leaving for about 10 days and will have no access to this site. I shall keep you in my thoughts and prayers though and check on you when I return.
I'm new to this site and was wondering how your mom was doing. I had a TT on June 18th and was also diagnosed with Hurthle Cell Cancer. It was minimally invasive, but I have just had the slides sent to Sloan for a second opinion.
I know you were wondering about treatment centers...look into Sloan-Kettering. They had done a study on HCC.
Good Luck to your mom
I just got my second opinion report back. I called myself and requested they fax it to me. I had a TT on June 11 for hurthle cell neoplasm and over eight other nodules ultrasound positive throughout the thyroid. My DX was hurthle cell adenoma. I have read it is hard to dx a hurthle adenoma from a hurtle cancer. I requested a second opinion pathology with MDA in TX, specifically with a hurthle cell expert. It was reviewed by a thyroid head & neck pathologist and it is stated I had "multinodular adenomatous goiter with hurthle cell changes" in rt and lt lobes, no mention of "the hurthle adenoma" as in first patholgy report which also reported nodular hyperplasia in the right, left and isthmus. Recently I received correspondence from a thyroid cancer doctor/expert at one of the other thyroid cancer support areas. He suggested my pathology slides and possibly the "block" be sent and reviewed by one of three top hurthle/thyroid expert pathologists. I feel like I am never going to come to an end to this! So I have just placed a couple of calls to see about yet a third opinion. Apparently adenomas are frequently misread even by large name cancer facilities? And there exists an on-going debate as to what determines exactly a malignancy, an adenoma from a cancer. I do not want to find out later on a hurthle cancer was missed and then I have a huge problem because I received no treatment. My situation is different. It seems once cancer is dx’d a second opinion would provide additional helpful information for treatment guidelines. I'm just ranting here I suppose. I do not feel confident at all, with all of the research I was basically forced to do on my own, that this hurthle cell adenoma DX or whatever, is 100% accurate. My pathology reports are extremely brief. My FNA was hurthle cell neoplasm by two different pathology institutions. Perhaps after receiving a hurthle expert patholgy review I can finally put this issue to rest. Please let us know about the quality of your second opinion from sloan kettering! I am very interested! Lois
My 18 year old daughter is preparing this summer (after she apears in Cabaret locally)for surgery to remove her thyroid after a partial removal that diagnosed Hurthle Cell Carcinoma from Sloan-Kettering. Our new venue will be UCSF as we live in Northern Calif. I trust this is a cutting edge center for HCC. Posters here would help us all to preface with their medical center. I am getting advice to find the place with the most up-to-date research regionally. We just had some "precision ultra sound" to determine the extent and location of lymph contamination from the Hurthle cells. I am not encouraged by hours of research on the profile of this particular disease. Treatment is neither definitive nor effective long-term because it is such a small sample of thyroid carcinoma. Even best-case as I have read above, shows that discomfort and life-style disruption is inevitable with no predictable outcomes. That is lousy for an 18 year old who has been planning a musical theatre degree of study in NYC this fall. She has to put it off a year to rehabilitate her voice. Who knows how she will proceed after a year. But my circle of people who care are urging me to keep the faith. So I'm sorry to vent, I really do value the audience's collective wisdom, and I know the future has its own way... Thanks for being there. The Mom.
I was diagnosed with HCC at 49 years old, and can't imagine doing it at 18. Your daughter needs your strength, your support, your positive outlook, and your faith. I was diagnosed at a relatively early stage in March and had RAI in April. I too have read the prognosis and treatment options available, and was discouraged. I had one endo who was very positive with me, and my PCP who found it totally by accident is also encouraging me. I also was assigned a One-on -One from the Thyroid Cancer Survivors Group and she has been living 8 years with HCC and has had no recurrence. Realize that on the websites and support group most people are there because of active disease. Survivors usually stray away from groups after being symptom free to just try to live their lives. Keep the faith for your daughter.....faith that after something so horrible has happened to her, but will result in something else wonderful in her future! I don't know what this is, but I'm sure that with your love and support it will be amazing! Hugs.....thanks for being such a good mom to your daughter! She needs you now more than ever.
I got just the message I needed to hear from you weberdns! Bless you. I am living in two worlds right now. One - in my head about the nightmare to come in August, two - in my home with a vibrant, awesome teen who is entirely symptom free! She is rehearsing hard, singing and dancing for her part as Frenchy in Cabaret at the local CC this summer. You can bet her dear daddy and I will be giving rousing ovations at as many of the 18 shows we can attend!
Thank you so much for your help.
So glad to have been help! I don't get here as often as I should because I'm torn with wanting to come here, but also wanting to get back to my "normal" life!! My PCP told me that I need to relax and enjoy my life and feels that a full cure is possible. So I come back saying that I had my thyroid removed March 4, adn March 12'th. Had my RAI in April into the first of May. It's now July and I am still symptom free. I know that it isn't a lot of time....but it is a time for celebration. My scan showed only neck activity after my RAI and my thyroglobulin is undetectable. I'm going to keep celebrating each day and try not to worry. Please give your daughter a cheer fur me during her performance. Please feel free to either post here if you need any more support or have questions, or send me an e-mail at email@example.com God bless all of you!
Can you please ask for the TNM stage of your daughter's pathology/prognosis? I would imagine, and hope, that her age is a real positive factor here. Also, the size of the tumor, whether it was found in lymph nodes, and whether there was distant metastatic disease. This all plays a part in her prognosis.
Please keep me posted.
Thank you for your interest, Elaine. I hadn't noticed the TNM stage on the report. It is not easy to distinguish the meanings of the line that contains those initials. It says, "AJCC p TNM Staging (7th Ed. (based on available surgical material from this case): pT1b pNX pMX." We do not have results of the lymph ultra scan yet. But there is vascular and capsular invasion. There is no mention of metastatic disease. The tumor is 1.6cm greatest dimension.
You are all my new BFFs!
removal and RAI. When they remove her thyroid they will check the lymph nodes for involvement. The same thing happens after the RAI. HEre is what these letters mean.
•T indicates the size of the main (primary) tumor and whether it has grown into nearby areas.
•N describes the extent of spread to nearby (regional) lymph nodes. Lymph nodes are small bean-shaped collections of immune system cells that are important in fighting infections. Cells from thyroid cancers can travel to lymph nodes in the neck and chest areas.
•M indicates whether the cancer has spread (metastasized) to other organs of the body. (The most common site of spread of thyroid cancer is to the lungs. The next most common sites are the liver and bones.)
Numbers or letters appear after T, N, and M to provide more details about each of these factors. The numbers 0 through 4 indicate increasing severity. The letter X means "cannot be assessed because the information is not available."
T categories for thyroid cancerTX: Primary tumor cannot be assessed
T0: No evidence of primary tumor
T1: The tumor is 2 cm (slightly less than an inch) across or smaller and has not grown out of the thyroid.
T1a: The tumor is 1 cm (less than half an inch) across or smaller and has not grown outside the thyroid.
T1b: The tumor is larger than 1 cm but not larger than 2 cm across and has not grown outside of the thyroid.
T2: The tumor is between 2 cm and 4 cm (slightly less than 2 inches) across and has not grown out of the thyroid.
T3: The tumor is either larger than 4 cm or it has begun to grow a small amount into nearby tissues outside the thyroid.
T4a: A tumor of any size that has grown extensively beyond the thyroid gland into nearby tissues of the neck, such as the larynx (voice box), trachea (windpipe), esophagus (tube connecting the throat to the stomach), or the nerve to the larynx. This is also called moderately advanced disease.
T4b: A tumor of any size that has grown either back toward the spine or into nearby large blood vessels. This is also called very advanced disease.
How is thyroid cancer staged?
Staging is the process of finding out if and how far a cancer has spread. The stage of a cancer is one of the most important factors in choosing treatment options and predicting your chance for cure and long-term survival.
Staging is based on the results of the physical exam, biopsy, and imaging tests (ultrasound, CT scan, MRI, chest x-ray, and/or nuclear medicine scans), which are described in the section, "How is thyroid cancer diagnosed?"
The TNM staging system
A staging system is a standard way for the cancer care team to summarize how large a cancer is and how far it has spread. Ask your doctor to explain thyroid cancer staging in a way that you understand so that you can take a more active role in making informed decisions about your treatment.
The most common system used to describe the stages of cancers is the American Joint Committee on Cancer (AJCC) TNM system. The TNM system describes 3 key pieces of information:
T categories for anaplastic thyroid cancers:T4a: Tumor is still within the thyroid.
T4b: Tumor has grown outside of the thyroid.
N categories for thyroid cancerNX: Regional (nearby) lymph nodes cannot be assessed.
N0: No spread to nearby lymph nodes.
N1: The cancer has spread to nearby lymph nodes.
N1a: Spread to lymph nodes around the thyroid in the neck (called pretracheal, paratracheal, and prelaryngeal lymph nodes).
N1b: Spread to other lymph nodes in the neck (called cervical) or to lymph nodes behind the throat (retropharyngeal) or in the upper chest (superior mediastinal).
M categories for thyroid cancerM0: No distant metastasis.
M1: Distant metastasis is present, involving distant lymph nodes, internal organs, bones, etc.
Once the values for T, N, and M are determined, they are combined to find the stage. Stage is expressed as a Roman numeral from I through IV, with letters used to divide a stage into substages. Unlike most other cancers, thyroid cancers are grouped into stages in a way that considers both the subtype of cancer and the patient's age.
Papillary or follicular thyroid carcinoma (differentiated thyroid cancer) in patients younger than 45Younger people have a low likelihood of dying from differentiated (papillary or follicular) thyroid cancer. The TNM stage groupings for these cancers take this fact into account. So, all people younger than 45 years with papillary thyroid cancer, for example, are stage I if they have no distant spread and stage II if they have distant metastases beyond the neck or upper mediastinal lymph nodes.
Stage I (any T, any N, M0): The tumor can be any size (any T) and may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).
Stage II (any T, any N, M1): The tumor can be any size (any T) and may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).
Papillary or follicular thyroid carcinoma (differentiated thyroid cancer) in patients 45 years and older:Stage I (T1, N0, M0): The tumor is 2 cm or less across and has not grown outside the thyroid (T1). It has not spread to nearby lymph nodes (N0) or distant sites (M0).
Stage II (T2, N0, M0): The tumor is more than 2 cm but not larger than 4 cm across and has not grown outside the thyroid (T2). It has not spread to nearby lymph nodes (N0) or distant sites (M0).
Stage III: One of the following applies:
T3, N0, M0: The tumor is larger than 4 cm or has grown slightly outside the thyroid (T3), but it has not spread to nearby lymph nodes (N0) or distant sites (M0).
T1 to T3, N1a, M0: The tumor is any size and may have grown slightly outside the thyroid (T1 to T3). It has spread to lymph nodes around the thyroid in the neck (N1a) but not to distant sites (M0).
Stage IVA: One of the following applies:
T4a, any N, M0: The tumor is any size and has grown beyond the thyroid gland and into nearby tissues of the neck. It may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).
T1 to T3, N1b, M0: The tumor is any size and may have grown slightly outside the thyroid gland (T1 to T3). It has spread to certain lymph nodes in the neck (cervical nodes) or to lymph nodes in the upper chest (superior mediastinal nodes) or behind the throat (retropharyngeal nodes) (N1b) but not to distant sites (M0).
Stage IVB (T4b, any N, M0): The tumor is any size and has grown either back to the spine or into nearby large blood vessels (T4b). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).
Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).
Medullary thyroid carcinoma Stage I (T1, N0, M0): The tumor is 2 cm or less across and has not grown outside the thyroid (T1). It has not spread to nearby lymph nodes (N0) or distant sites (M0).
Stage II: One of the following applies:
T2, N0, M0: The tumor is more than 2cm but not larger than 4 cm across and has not grown outside the thyroid (T2). It has not spread to nearby lymph nodes (N0) or distant sites (M0).
Stage III (T1 to T3, N1a, M0): The tumor is any size and may have grown slightly outside the thyroid (T1 to T3). It has spread to lymph nodes around the thyroid in the neck (N1a) but not to distant sites (M0).
T4a, any N, M0: The tumor is any size and has grown beyond the thyroid gland and into nearby tissues of the neck (T4a). It may or may not have spread to nearby lymph nodes (any N). It has not spread to distant sites (M0).
Stage IVB (T4b, any N, M0): The tumor is any size and has grown either back towards the spine or into nearby large blood vessels (T4b). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).
Anaplastic/undifferentiated thyroid carcinomaAll anaplastic thyroid cancers are considered stage IV, reflecting the poor prognosis of this type of cancer.
Stage IVA (T4a, any N, M0): The tumor is still within the thyroid and may be resectable (removable by surgery). It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).
Stage IVB (T4b, any N, M0): The tumor has grown outside the thyroid and is not resectable. It may or may not have spread to nearby lymph nodes (any N), but it has not spread to distant sites (M0).
Stage IVC (any T, any N, M1): The tumor is any size and may or may not have grown outside of the thyroid (any T). It may or may not have spread to nearby lymph nodes (any N). It has spread to distant sites (M1).
This is not an actual stage in the TNM system. Cancer that comes back after treatment is called recurrent (or relapsed). Thyroid cancer usually returns in the neck, but it may reappear in another part of the body (for example, lymph nodes, lungs, or bones). Doctors may assign a new stage based on how far the cancer has spread, but this is not usually as formal a process as the original staging. The presence of recurrent disease does not change the original, formal staging.
If you have any questions about the stage of your cancer or how it affects your treatment, do not hesitate to ask your doctor
Hope this helps as you get more information. To learn all about Thyroid cancer go to http://www.cancer.org/acs/groups/cid/documents/webcontent/003144-pdf.pdf
Last Friday I had a 5 1/2 hour bilateral neck dissection. This was the 4th surgery for thyroid cancer. Two recurrent HCC intravascular tumors were removed (4.5 cm and 0.6 cm). Several lymph nodes were removed and none of those were malignant. I spent two nights in the hospital and am recovering well at home.
I never received a staging of the cancer when I first had it in 2006. I wsa so ill informed that I never asked about it.
Next I'll be seeing a radiology oncologist and will most likely be getting EBR treatments.
I am curious as to what screenings I should be getting in the future. It seems that my doctors and I were way to cavalier after my first surgery. In hindsight I know I should have been followed more closely. I am just lucky that my gut told me the small lump I found on my neck in February needed to be explored. Low and behold, there were three recurrant HCC tumors growing in my neck. (One was removed in May). Can anyone give me an idea of what tests they would expect to have and at what intervals given my history. I don't want to be overly concerned, but I also want to keep on top of this disease. I really appreciate your sharing your thoughts.
I was diagnosed with HCC May 2009. I was able to be referred to the Head and Neck Cancer Center at UCSF by my primary care physician(I life in San Francisco). Dr. Lisa Orloff is one of the top head and neck cancer surgeons in the country--and UCSF was identified by my daughter who works at Johns Hopkins as one of two top centers for HCC in the country(the other is Mayo in MN). Dr. Orloff performed a second completion thyroidectomy on me in Aug 2009, I had radioactive iodine therapy in Oct 2009--continued with blood tests and sonograms for the past year and recently had a PET scan and a radioactive iodine scan. The treatment at UCSF is top notch and Dr. Orloff is straightforward and direct in telling you what the situation is, what you need to do, and the likelihood of various outcomes. You will most likely have a team of doctors who follow your case--an endocrinologist, a cancer surgeon, and a nuclear medicine specialist. My endocrinologist is not a part of UCSF(she trained there however) and transferring medical tests and other information between medical complexes can be bothersome--you have to be the advocate and follow up. If possible, I would recommend having a UCSF endocrinologist as part of your team if at all possible.
If I can be of any help, please contact me at firstname.lastname@example.org
Thank you, Warwiz... This is reassuring. I am already noticing the lag times: we've been awaiting the UCSF precision ultra sound report for over a week now. I won't hesitate to advocate and follow up. It will be a relief to have a team... anyone who actually knows what Hurthle cells are! So far I've been a step ahead of the doctors in our town. Our UCSF consult appointment is with Dr. Jessica Gosnell.
I read about the PET scan successes for locating recurrence. Is it a dangerous procedure? And, I worry about a lifetime of radiation for an 18 year old. Also, I have lots of questions about the iodine and radiation logistics after the thyroidectomy. Lack of energy & isolation are the opposite of what should be happening the month before start of frosh year at college.
To the untrained eye, the TNM looked like stage 1, which is awesome. As I mentioned before, her youth is a definite positive here.
As for the vacular and capsular invasion, I would not be overly concerned, as that is usually the case. Keep in mind this is called an accidental- type cancer; thyroid, that is, as it found quite by accident. The good news is that is was found in the very early stages, or so it appears, and in a patient quite young.
While considered recurrent, HCC,it isn't always the case. Too little ris known about it for anything to be 100% on the money.
Remain poisitive, and I am sure your daughter will react the same. Positivity acts on all parts of the brain and body. It rocks!!
I'll catch up in early August when I return.
Biskie-I am a 17 year old that was diagnosed with hurthle cell carcinoma just today and i'm scared out of my mind- i would love to talk to your daughter, i think it would really help me to talk to someone who's in my position at this point. Is there any way i could contact her/would she like to talk to me?
Hi graceam92... Sorry I took so long to tune back in to the forum. I hope you are still there. I can imagine how you feel. I will help my daughter get in touch with you. You two will have much in common.
Hi again graceam92. I haven't seen another post from you. I hope you find your way back here. My daughter wants to contact you, but we don't have a way to find you. You can write to me at email@example.com
Put "From Grace" in the subject so I will recognize you. She just had her thyroid out. We are waiting for the labs to come back to let us know the next steps for treatment. Trying to stay positive and finding fun. Please write.
My daughter Sarah, 19 yrs., is probably the same age as your daughter. Sarah was diagnosed with Hurthle cell cancer after developing a fast growing large tumor. We noticed the lump in late April 2011 and the doctor treated her for mono as she was finishing up her first year of college and was having much difficulty with concentration and energy. Just tired all the time. At the end of May when it became apparant the growth was getting larger we visited the ENT doctor. From there, a fine needle biopsy and ultrasound then slides sent to Mayo clinic that revealed Hurthle cells. Sar's first surgery was this past July and cancer was revealed in lab report after tumor examined. Tumor was 3.5 at largest dimension and had grown considerably from the time she had an ultrasound in June until the surgery in July. Sarah went in for 2nd surgery 3 weeks later to remove all of thyroid, then RAI, then synthroid and now cytomel medications. Sarah has had a wonderful attitude through it all but it has been extremely challenging lately trying to get meds to the right level. We go this Thursday for bloodwork after 4 weeks on synthroid and to see if she is clear from cancer. How is your daughter doing currently as it seems as if she may have already been through the medication-leveling to feel good again? Has your daughter remained clear of cancer? It is puzzling for someone so young to have this type of cancer but from what we have heard from various doctors, Sarah's prognosis is better because of her age? Sarah has been treated here in Toledo, Ohio and we have had wonderful doctors that have acted quickly in getting her in for every test/treatment. We have been very fortunate thus far. Hope your daughter has fared well and is heading to college soon. Would be interested in hearing from you.
I am sorry to be posting a month after your post. Dr. Lisa Orloff, Chief, Head and Neck/ Endochrine Surgery and Oncology at UCSF in one of the top experts in the country in thyroid cancer and has extensive experience with HCC. Hopefully you are in contact with her and her department. I was diagnosed with HCC in May 2009, have had surgery and RAI and then 9 months of tests as follow up. I have an endocrinologist trained at UCSF but associated with CPMC. The team at UCSF--Dr. Orloff and Dr. Jeanne Quivey who is an expert radio-oncologist in particular are tops in the country.
I hope you have found the right place for your daughter.
My mom was just diagnosed yesterday with HCC. She is getting the other half of her thyroid removed next week. I have read so many posts and I'm wanting to know what is the best advice I can get from you experienced people. I am pretty much a mess over this, due to the fact I lost my husband to cancer 6 years ago. He had colon and bladder cancer, but it was a horrible battle that we lost. My son is only 13, and he has only seen death as a result from cancer, so I'm here, and willing!
Hi everyone. I looked thru the postings here and didn't find anything about a test that I read about on the Net yesterday. I'm wondering if anyone has heard of Histopathology? It is a successful procedure for testing some genetic structures of patients with Hurthle cell cancer to determine the likelyhood of recurrance. Here is the article. The good stuff is at the end.
Patients and Histopathology
The isolation was brief (about 10 days) and it was not total. You could be around others as long as you remained at arms length. Sleeping apart was also necessary, which should not be an issue for your daughter.
I did not lose my energy, although I did lose a little hair. My eyes and mouth also were a bit dry post RAI 131. Unfortunately, it is our only option after a diagnosis of HCC is made.
Thank you Samanjan... Again and again. Your focus on upbeat messages is invaluable to all of us. The informed guidance is a big plus too. We'll still be here in August when you return. With more questions and experience...
Hi: I too have hurthle cell cancer. Just had thyroid removed in April. After nearly 3 months, they finally tell me about hurthle. The bad news parts. Mind you, I had been to an onocology doctor, that said "dont want to put you through anything unnessary (I felt like I had been before a medical board, because I am 64 years old. So now, my endoctrine doctor, says, "I want you to get a second opinion". I am going to Shands Hospital in Gainesville, Fla on the 13th for consultation. I dont know where I stand. I do believe that there has to be a primary tumor somewhere else, as Hrthle ssettles in the lungs and the bones. I also read that it could be caused by too much radiatiion. So what have you found out? We need to keep in touch as new information develops. I wish you the best and please write. Pat
The reference you make to lungs and bones are the "usual" places that Hurthle Cell is found when it recurs. Hurthle is found in the neck. The third place know for recurrence is the central nervous system, although I personally know of an instance where it was found in the liver. Whether it comes back or not is usually determined by what they found when they did your initial stage of TNM after surgery to remove our thyroid. Ask for pathological report. How invasive was the cancer u[pn detection...which stage I,II,III, IV? Node involvement? Distant metastis?
You are right about one thing...it is a radiosensitive tumor. Avoid unnecessary x-rays including dental, if possible.
Just at Johns Hopkins last week and my doctor pronounced me "cancer free" for now. What a nice Thanksgiving present. Nearly two years into this abyss, but not ready to give in!
I only need an ultrasound yearly now and a visit with my endocrinologist twice yearly. I get blood work done every three months since I am self pay. I feel there is no need to let something go an extra three months, especially Hurthle Cell Carcinoma.
It has been a stretch getting my Synthroid adjusted so that I have adequate energy without making my body hyperthyroid, but it seems we have managed that as well.
I'll keep checking on everyone.
Have a wonderful holiday.
I am so happy you were given such great news! Wishing you and yours a happy holiday season.
Elaine, I am so happy to see you and others back here! I thought they dropped our forum and I was left to wonder about everyone. Congratulations to you after so long holding on. I hope you know how much you offer the newcomers with your encouragement and information!
I can report that my daughter (18) has had her 2nd lobectomy and successfully rehabilitated her singing voice. Tomorrow we start Thyrogen to prepare for her radioiodine ablatement therapy followed by a body scan net week. Hopefully, it will be over except for the periodic scans and replacement thyroid the rest of her life.
I managed to get the insurance company to pay for the Thyrogen so she won't have to go hypo and miss her intensive dance routine. But I had to ride the doctor to get it accepted. It all took lots of "Google-ing" to understand all of the proceedures, and new vocabulary. I encourage everyone to figure out how to do basic research because most of the doctors won't tell you much beyond the mechanics of treatment.
Now, does anyone know what happened to "Grace92" from the prior page? She was 17, newly diagnosed, and quite worried. I'd like her to get in touch with my daughter for support.
I will return here to see any reports.
Again, Elaine, I can't say how much you and the forum have helped us. Please stick around!
My best for the Holidays... Biskie AKA Linda.
Samanjan, Hope this note finds you well,you seem to have alot of knowledge about the hurthle cell. I am so happy to find this web site ,I have tried to find out as much as possable,there is not much out there.
I'm 46 yr old female with hurthle cell ,had a full neck disection, 39 lympnodes removed found a small spot on lung.just had very strong 1-31 treatment dr. said it did not take & that it had spread to the other side under my coller bone. so Im getting 12 weeks off to see what surgen I will need for my next sugery. I love my doc & surgen . Sorry to dump all this no one seems to get it. (its a good cancer to have, you should feel better now, but you look good.) my surgery was the last week in sept went to work at 3 weeks for 2 weeks then started the tsh & 1-31 treatment hospital sick as a dog,With a smile .
Thanks for listening
God bless, Carol
I think contacting me at my regular email is a good place to start. I have quite a few
questions to begin with.
I would like you to find your original pathology, date of surgery, thyroidectomy, and how long afterwards the neck dissection, etc., etc.
Please write me at firstname.lastname@example.org.
I also would like to know stage at time of original surgery.
How long after diagnosis was the first recurrence?
Where was the neck dissected? There are seven ( I-VII) levels and two are usually never touched. Schematics are available in a book I have which I can discuss with you or scan for you.
BTW, I thought only my family used "as a dog!"
Do a bit of homework for me and let me hear from you asap.
I also understand your frustration with the clueless people!!
God bless you as well.
P.S. For all you women out there...post RAI131 can everyone say, "dry?" This is especially true for anyone post menopause. Eyes, mouth, and I could go on. About where I am not going...there is hope and there is medication. Don't depend on your doctor(especially a male) to give this a second thought. Be your own advocate, and ask for numbing agent, Lidocaine Hydrochloride Jelly USP,2%. It is prescription medication.
There is also hope, it gets better:)
Brenda, I lost your email somehow and need you to contact me again.
Hey, Carol. I was just wondering how things were going for you now? My mom is kind of in the same situation so I am wondering what all you have tried and if anything has worked??
Just found out my mom has "HCC" Herthle Cell. Dose anyone have any words of wisdom for me? I have been trying to research this a little. She gose in Friday for the other butterfly removel. She is 50 years old and stage 2.
I am new to the boards and I am eager to learn everything about my Thyroid cancer! I was just diagnosed with Hurthle Cell Carcinoma after my Thyroid surgery on December 13th. I am a 33 yr old female, and as I understand it Thyroid Cancer is rare, but Hurthle even more so. My tumor was removed with the left lobe and ithmus. The pathology report came back as a Hurthle Cell Carcinoma. The tumor weighed 33 grams and was 4x5 cm. I was really hoping that someone may have advice of what I may expect at this point? I went to my one week follow up this Monday and was given the initial pathology report information. I was then asked to come back to the surgeon on the 29th of December for additional consultation and discuss the results of the pathology report. I believe out of kindness they are waiting to discuss the pathology further because it is Christmas week and they are trying to give me a break....But the wait is torture! I really hope that I am not in for a second surgery! From what I read online, I think I am, due to the pathology and size of my tumor.....I have also read that Hurthle cells do not "take up" the I-131 radioactive iodine, if so, what do they use instead? Thanks for the advice, I have way more questions than answers at this point. Since this is the week of Christmas, I understand everyone is with their family and not reading the boards, so I may just have to wait! Merry Christmas to all of you and thanks for your help!
I also had HCC. My initial surgery was last July when they removed a large tumor from the right lobe and isthmus. My tumor was similar in size to yours, 4.7cm. The pathology report came back positive for HCC. The recommendation was to have a total thyroidectomy 2 weeks later. The second surgery was actually easier than the first, and I felt good within 3 days.
I had the 131 treatment 6 weeks after surgery, in September. Now, I am on synthroid and feeling well. I'll have my bloodwork tested every 3 months. Should there be a cancer recourance it will show up with raised tg levels.
Good luck to you. I know it's scary, but hang in there. This website is a great resource for information.
You can almost certainly expect an additional surgery. My question is, did you have fine needle aspiration and if so, did it not come back as hurthle neoplasm? I ask because if it did, I am quite surprised that they did a partial thyroidectomy to begin with.
As for the R131, while not perfect by a long shot, is our only option and hope in killing off remant thyroid cells. Be prepared for some dose and a bit of time at arms length with others. It is not as horrible as you are led to believe.
Depending on where you live and which hopital you go to is how much knowledge you can expect. It is rare, aggressive, and sneaky cancer. It is also maageable when caught early(no lymph involvement.)Ask questions about how invasive it is, etc. Your age and the size of tumor with no lymph involvement and no distant cancer sites would most likely read T2N0M0 (Stage two based on your age and tumor size.)
Blood tests and full neck ultrasounds are your best bet once you have had the 131. It will serve you well to be your own advocate and not depend on others to tell you when to have lab work done. I do mine every three months, not six. Why give anything an extra three months that we don't want?
Good luck and question away. There are some great medical texts on Amazon as well. I am nearly two years ahead of you with this. My surgery was 2/2009.
Merry Christmas and fingers crossed for a good new year!
Depending on where you live and which hopital you go to is how much knowledge you can expect. It is rare, aggressive, and sneaky cancer. It is also manageable when caught early(no lymph involvement.)Ask questions about how invasive it is, etc. Your age and the size of tumor with no lymph involvement and no distant cancer sites would most likely read T2N0M0 (Stage two based on your age and tumor size.)
Thanks for your comments! I did have a FNA it came back as follicular neoplasm, at first they believed it was probably follicular, so the surgeon only did the partial. During the surgery to remove the left node and bridge the frozen section came out Hurthle, but he said prob 80% benign/20% chance that it would be hurthle carcinoma. Unfortunately I was the 20% and it came back hurthle carcinoma. As I mentioned in another post I did find out from my endocrine doctor yesterday that I will be having the surgery to remove the remaining thyroid. He and the oncology surgeon had spoken the evening before my appointment yesterday. I will keep reading the boards and try to contribute as I learn more. My appointment with the oncology surgeon is tomorrow, and then I will know what day to expect the second surgery. Thanks again!
Thanks LizP, I did find out from my endocrine doctor yesterday that I will be having the surgery to remove the remaining thyroid. He and the oncology surgeon had spoken the evening before my appointment. So, at least I know there will be another surgery within a week. Thanks for your comments, it makes me feel better now that I know there are others who had a similar case and it is possible to have the I131 treatment. Best wishes to you as well!
Did you ever find anyone? I have been diagnosed within the last month and am having trouble relating to my family about this.
Yes, I was diagnosed and had surgery in July 2001. I've had trouble taking levoxyl (thyroid replacement) because it makes my heart race (180+ beats per minute), and I'm pretty miserable taking it. I also switched from Prozac to Zoloft which made my TSH jump from 1.7 to 43. Anyone else have that experience? I'm back on Prozac now and will re-check in 8 weeks to see if there's any difference. What a miserable diagnosis. If I hear one mor health professional say how "lucky" I am to have this instead of a "more serious" diagnosis, I think I'll punch him/her. There's nothing "lucky" about this. Also, my father was diagnosed with thyroid cancer (medullary), and we were both exposed to radiation when he was enlisted in the Army in the 1950's. Anyone else have that experience? It was in the desert near Phoenix, AZ.
I have hurthle cell carcinoma and was diagnosed in Dec. 2004. My Dr. won't let me take Levothyroxine as she states it isn't as stable as synthroid. I have heart palpitations something terrible. It got so bad one night that 15 mg. of valium wouldn't slow it down. My breathing was labored and it felt like a panic attack. I have them a couple weeks out of the month. I was taking Prozac, but it gave me migraines so I stopped taking anything like that, but I feel like I do need to be on something. I agree, if I hear the words that I am lucky to have this diagnosis I may end up with an assault charge also.
Did your TSH change much when you dropped the prozac?
Not that I know of. They didn't say anything about it and at that time I wasn't an advocate for myself. I still don't know what my TSH levels were. I asked my endo several times over the phone, but haven't gotten an answer. I am going in to see her in May and have another scan done and this time I have a list of questions for her.
Yup. I'm on my 3rd recurrence of Hurthle Cell cancer, surgery number 5 coming on May 4th. Long story short, diagnosed with HCC Dec. 2003. TT Feb. 2004, followed by RAI. Subsequent check ups for three years, fine and dandy. 2007 scan showed a recurrence. Had another dose of RAI, but it didn't work. A year later had surgery for a lesion on my left posterior hip. Easy surgery, outpatient, 1 1/2 hour surgery (or procedure, as they like to sugar coat it). Subsequent blood tests showed my thyroglobulin was still rising. Subesequent PET scan in May 2009, clean. Blood tests in Nov. 2009 showed my thyroglobulin had quadrupled since May. Subesequent PET scan in Jan. 2010 showed spots near my stomach. An endoscopy, CT scan and liver biopsy later, metastasis to my liver. Liver resection in March 2010. Subesequent blood tests were clean until Nov. 2010. Thyroglobulin rising again, from undetected below .2 to .3. Blood tests in Feb. 2011 showed elevated thyrglobulin up to 4.5. PET scan showed another metastasis, to the same spot in my left hip bone, just behind the previous disection and bone cement.
If you can believe it, I was actually relieved when my doctor told me it was in my hip bone again. Why? Well, a hell of a lot beter than being in my liver again. That was a really tough surgery. Also, it's basically the same surgery as 2008. He can use the same incision spot, so just will be the same scar. Recovery time is only 3-4 weeks.
Am I happy to have another recurrence? Hell no! But I just thank God it wasn't my liver again. The truth is, I'll never be cured of this cancer, NEVER! I look at it as a nuisance, if you can ever think of any kind of cancer as being a nuisance. It's a disease that's not curable.
So, I will carry on, keep the smile on my face to hide the aggravation and pain, and know it's always 5 o'clock somewhere. I just want to be there, at 5 o'clock, always and forever, whether in reality or just my mind, it will always be happy hour.
To all my sisters and brothers fighting HCC or any kind of cancer, I salute and support you. Though our paths may not be the same, they are parallel.